An estimated 10% of women have this condition, which can include debilitating pain. But it’s underresearched, poorly understood – and still without a cure.

My painful periods started when I was about 14. I wore heat patches to school in the hope that they would help me last through the day. Sometimes they did. But sometimes I ended up in sick bay writhing in agony on the fold-out bed, where the receptionists didn’t know what to suggest because I’d already had my appendix removed.

Ten years of pain later, I’m finally in the process of being diagnosed with endometriosis. But far from simplifying my issues, what I’ve seen during my many doctor’s appointments is that the disease remains poorly understood – and that its diagnosis and treatment can be a complicated and life-long ordeal.

Endometriosis is a gynaecological condition associated with menstruation where tissue similar to the lining of the womb is found in other areas of the body, including the fallopian tubes, pelvis, bowel, vagina and intestines. In rare cases it has even been found in the lungs, eyes, spine and brain – in fact, the only place in the body it has never been found is the spleen. Symptoms include severe, sometimes debilitating, pelvic pain, fatigue and heavy periods.

Endometriosis is estimated to affect one in 10 women of reproductive age (Credit: BBC/Alamy)

“We have good evidence that having serious pain alters your central nervous system, alters how you respond to pain in the future and makes you potentially more susceptible to other chronic pain conditions,” says Katy Vincent, a senior pain fellow at the University of Oxford.

The primary symptom is usually acute pelvic pain with no obvious physical cause (Credit: Alamy)

For women who are symptomatic, and many are not, the primary symptom is usually acute pelvic pain with no obvious physical cause. That may make it enigmatic. But that it was a health condition experienced only by women – and is linked to menstruation, in particular – has made it more of an enigma than it perhaps could be.

Many cases dismissed as ‘hysteria’, in which symptoms included convulsions from pain, may well have been endometriosis (Credit: BBC/Getty)

The historic underestimation and misunderstanding of endometriosis continues to inform modern medicine. Researched less than other conditions, it’s also less understood. The cause of endometriosis is not known. There is no cure. It often takes up to around a decade to get diagnosed, and the only means of definitive diagnosis is a form of keyhole surgery known as laparoscopy.

I never remember a single GP or hospital doctor, anybody, saying the word ‘endometriosis’. Or just even asking the right questions – Alice Bodenham

I spoke to three women now diagnosed with endometriosis, all in their 20s and 30s. Along the way, all three had been misdiagnosed with other conditions and had their symptoms dismissed or underestimated. “I never remember a single GP or hospital doctor, anybody, saying the word ‘endometriosis’. Or just even asking the right questions,” says Alice Bodenham, 31. “It’s very much ‘it could be this’, or ‘you’re making it up’.”

One UK survey found of 2,600 women with endometriosis found that 40% had visited the doctor 10 or more times before being referred to a specialist

It may be little surprise, then, that one UK government survey of 2,600 women with endometriosis found that 40% had visited the doctor 10 or more times before being referred to a specialist. Bodenham, for example, collapsed multiple times before her pain was taken seriously.

Caitlin Conyers, 24, who runs the blog My Endometriosis Diary, began to suspect she might have the condition through her own research, but this was dismissed by her physicians. “About three years ago I ended up in an urgent care centre. I’d been Googling the different causes and one was endometriosis and I did suggest this to the doctor at the time and they just said, ‘Oh no, it definitely isn’t that’,” she says. “I explained that I had really bad period pain and general abdomen pain and they still said no.”

Oxford’s Vincent isn’t hesitant about whether gender plays a role. “If every 14-year-old boy went to the GP saying, ‘I miss two days of school every month’, they would stop missing school every month,” she says.

A lack of awareness on the patient side can delay diagnosis too. Menstrual taboos still persist and two of the women I spoke to reported being told, whether by family or through sexual education, that periods might be painful or uncomfortable. What they never understood was how painful (or not) a normal period should be.

Menstruation taboos mean that many women don’t know how painful (or not) a normal period should be (Credit: BBC/Alamy)

Endometriosis charities and campaigners around the world are working to raise awareness, and their efforts seem to hav helped. In 2017 the Australian government launched a National Action Plan For Endometriosis which seeks to “improve the treatment, understanding and awareness” of the condition, and increased funding to A$4.5m (£2.5m), new clinical guidelines and – crucially – for the subject to be made part of primary healthcare professionals’ medical education. In the UK, government advisory body the National Institute for Health And Care Excellent (Nice) released guidelines in 2017 with the aim of standardising diagnosis and treatment pathways for patients.

But while that’s a good step in the right direction, there already are many guidelines for GPs to juggle, says Anne Connolly, clinical champion for women’s health at the Royal College of GPs. Lone Hummelshoj, chief executive of the World Endometriosis Society, adds that the lack of specialist centres is another worldwide problem.

No quick fix

Even after a diagnosis is reached, symptom management is by no means straightforward –and misinformation persists here too.

Some medical practitioners still tell patients pregnancy is an effective treatment (Credit: BBC/Alamy)

Hysterectomy is not a cure, and endometriosis can occur afterwards (Credit: BBC/Getty)

Another potential treatment is medical menopause. However, it is not a long-term option because it can affect bone density, particularly in young people, and, although rare, one of the potential side effects cited by the brand Zoladex is accidental full menopause. Cook told me there is a lack of informed consent around the use of this treatment. She says, “One of the things I hear a lot of is the number of women who end up taking drugs or having injections to go into medical menopause and they do not realise that’s what it is.”

As such, there is research ongoing into potential alternatives.

“Drug treatments for endometriosis are entirely focused on hormones and we need something else because we know for a lot of women that doesn’t work very well,” says Krina Zondervan, a professor of reproductive and genomic epidemiology at the University of Oxford. “And it gives a lot of side effects that women are not that happy to experience in the long term.”

Although they treat only the symptoms, not the condition, painkillers are another option. But they aren’t without adverse effect, either. Bodenham tells me how the opioid painkillers she’s been taking for the past three years have left her with a constellation of side-effects including “anaemia and hypertension”. She says, “I used to run a 5k every week… and now some days just walking downstairs to get a glass of water feels like doing a marathon.”

While painkillers can help with endometriosis symptoms, their side effects can be major (Credit: BBC/Alamy)

There is some hope. The illness’ profile is on the rise and efforts are being made to educate GPs and patients about pelvic pain. But as patients wait for the medical system to catch up, their symptoms are still being misunderstood and their illnesses misdiagnosed with serious mental and physical health consequences.

Having found that birth control adversely affected my mental health, my next step is deciding whether to start treatment via the Mirena coil’s low dose of hormone, or to continue pursuing a definitive diagnosis via laparoscopy. But laparoscopy would require several weeks of recovery – and as a freelance writer with little job stability, I would need more savings than I have. It’s one more example of the difficult choices women with chronic pelvic pain face every day.

Correction: A previous version of this story inaccurately described one of Krystal Rodriguez’s symptoms as collapsing. This has been changed. We regret the error.

This story is part of the Health Gap, a special series about how men and women experience the medical system – and their own health – in starkly different ways.

Do you have an experience to share? Or are you just interested in sharing information about women's health and wellbeing? Join our Facebook groupFuture Womanand be a part of the conversation about the day-to-day issues that affect women’s lives.